I have something to share with you. Something quite under the surface about what we have had happen in our home lately. I have been scared to tell anyone as just as quickly as it came, I worry it could all disappear. Some of you may know, Our Girl has a rare form of epilepsy. We have been seeking the right medication to help her for the past 5 years. It has been a merry-go-round of ups and downs; never really knowing what each day, medication or seizure could bring with it. Well, due to a very small change in her CBD oil back at the beginning of October, assuming that's it because it is the only thing to have changed, Our Girl has been seizure free for almost two weeks. We haven't seen that in years. Especially long term freedom, combined with clarity of her mind-she is just herself!!!
This Blessing has terrified me. Why you may ask? Well, after years of trying new medication after new medication, we have always had a "honeymoon" period, if there was a positive change at all, or things would get worse, but anything positive was always short lived. And each time it became harder to want to hope. As of late things had become VERY rocky! She was triggered every time and there was no release of the tension and worry. Talk of another new drug and possibly a surgical implant were and are still on the table. We plan to continue to line these things up and be practical. Unfortunately being practical and still being hopeful have felt at odds. The fear welling up inside of me was numbing, and I was so scared to be excited!
In the past week I have been having God work on my heart, this all came to a conclusion after church this morning. The sermon was on the story of the Israelites, after being freed from Pharoh are left to wonder in the desert for 40 years due to their distrust and un-thankfulness to God (despite all that he had done through Moses to bring them out of slavery). But even in the years of trial, where they complained and never seemed to learn, God never left them. He, at every turn provided all that they needed. He still provided grace and love and food for them.
Trusting God has been a long process for me in these past 7 years of having a daughter with cancer, and then with epilepsy. Feeling like he could know "best" when I am in discomfort was not easy, and is not easy. But he cares not of my comfort. He cares only about my heart and I have felt my heart change. In the past few months, specifically, I finally feel like I can release and accept where I am, where we are as a family, and that my "normal" is not someone else's version. It's mine. God's gift to me. And He chose me because he knew it was best. Today I asked our pastor, "Am I allowed to be excited!?!", his reply was a huge and joyful, "Yes". The pulling I have felt on my heart this past week, was to trust Our Father in whatever the moment brings. To thank Him in whatever the day brings and to be glad in it. To celebrate this victory. Because it is a victory.
I've known all this in my head, but my heart was still hardened from the past. That dark and sad layer has been peeling away. I know it's not a perfect layer that has been revealed, but it is another layer that Grace has helped me to find. Now I find myself, well, beyond joyful. I'm reveling in these moments where my little girl is alert, aware, friendly, happy, smiling and laughing with a realness I have not seen in far too long.
This window into who my little girl is could end tomorrow, but it is gift. A gift into who my little girl still is and will continue to be even if the seizures return. I am afraid, I won't lie. But I know that with trusting God, we will come through this, whatever it is that comes our way. If God is the one leading me, I can do this. I can be who He needs me to be. Who He created me to be. And I am so THANKFUL!